Study shoots hole in 'liberation' theory

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby griff » Fri Apr 15, 2011 2:07 am

BooBear wrote: I made a comment nearly a year ago that I still stand by.

If CCSVI is the cause of or consequence of MS is irrelevant from a treatment perspective. If there is a condition that requires treatment, treat it.



What kind of condition? Just because you have a vein partially stenosed that does not justifies an operation. Ask some IRs and vascular surgeons who are not living from our money. That makes the debate that we do not know if it helps us the long-term or not. Don't get blindsided.
So why issue with this treatment?

IMO, it's because correcting the blood flow alleviates a lot of symptoms very quickly. It's because we, the captive customer base, are able to make some rather significant choices on our treatments and lives.



unfortunatelly, the captive customer base is a desperate customer base.

You should know that the major problems are the complications after operation and the long-term effct of the operation. These veins have never been treated before and we can see lots of complications. Veins get collapsed, scarring, intimal hyperplasia, etc. Many patients experienced initial improvements, then after a few months their conditions got worse than before.

The empowerment of this community scares those that have come to depend (financially, emotionally, substantially) on the dependence of these patients. When I can choose to live drug-free, I just impacted someone's financial statements. When I can make a choice at all, I just impacted a doctor's self-imposed importance in my life.



I wish we would be at that stage, but lets face reality.

At the end of the day, this is freaking simple.

The condition exists.
Treat it.
Treatment makes us feel better.
Deal with that.
Move the frick on.


Unfortunatelly, things are not that simple. Wake up! :)
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Postby Cece » Fri Apr 15, 2011 7:01 am

Liberation wrote:What kind of publications? The data they collected from patients through a questionery. :)

Dr Simka's and Dr. Ludyga's safety study:
http://phleb.rsmjournals.com/cgi/conten ... t/25/6/286

Dr. Simka's optical coherence tomography study:
http://ccsvism.xoom.it/ISNVD/Abstract-S ... erence.pdf

Dr. Simka's ultrasonography study:
www.fondazionehilarescere.org/pdf/04-2481-ANGY.pdf

Dr. Simka's MR study:
www.ncbi.nlm.nih.gov/pubmed/20127806

Dr. Simka on BBB compromise/endothelial damage leading to autoimmmune condition:
www.ncbi.nlm.nih.gov/pubmed/19442163

If you are right about the potential for Eastern European countries to do more with the follow-up and research, it would be a very good thing! I know Erika posted about going in as a control in January of this year.
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Postby 1eye » Fri Apr 15, 2011 8:40 am

Whew! Sure is drafty around here with all these holes in my theory. It's a good thing that scientists have better aim than journalists. I keep having to shoot holes in stacked decks and marked cards. Keeps me too busy to worry too much about theories. But it sure gets drafty. I think there's a leak in my shoes too. Might of got shot in the foot. :)
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Postby BooBear » Fri Apr 15, 2011 9:48 am

You should know that the major problems are the complications after operation and the long-term effct of the operation. These veins have never been treated before and we can see lots of complications. Veins get collapsed, scarring, intimal hyperplasia, etc. Many patients experienced initial improvements, then after a few months their conditions got worse than before.


We haven't met. I go by BooBear. I researched the treatment for a long time before I was successfully treated in Albany on Aug. 13. 2010.
While many patients experience issues post-treatment, how is that different from any of the other treatments available to this community currently? By the way, these veins do stenose in patients that are on dialysis. Wanna take a guess how they treat that condition? Yup. Angioplasty.

Unfortunatelly, things are not that simple. Wake up! :)


Wake up to what? The fact that I can wake up after a good night's rest free of pain? Check. Wake up alert and stay that way ALL day without medicinal support? Check. Wake up and walk- straight, balanced and unassisted? Yup. Got it.

Here is the deal. Everyone can and should research this option for themselves- no differently than they should do so for all of their treatment options. But make the treatment available to those who have done that research and do want to undergo the treatment. If it's risky, fine. So is Tysabri- more people died on Tysabri than on this treatment.

But I appreciate your view.
Three veins angioplastied.  One renewed life.  
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Postby BooBear » Fri Apr 15, 2011 9:50 am

You should know that the major problems are the complications after operation and the long-term effct of the operation. These veins have never been treated before and we can see lots of complications. Veins get collapsed, scarring, intimal hyperplasia, etc. Many patients experienced initial improvements, then after a few months their conditions got worse than before.


We haven't met. I go by BooBear. I researched the treatment for a long time before I was successfully treated in Albany on Aug. 13. 2010.
While many patients experience issues post-treatment, how is that different from any of the other treatments available to this community currently? By the way, these veins do stenose in patients that are on dialysis. Wanna take a guess how they treat that condition? Yup. Angioplasty.

Unfortunatelly, things are not that simple. Wake up! :)


Wake up to what? The fact that I can wake up after a good night's rest free of pain? Check. Wake up alert and stay that way ALL day without medicinal support? Check. Wake up and walk- straight, balanced and unassisted? Yup. Got it.

Here is the deal. Everyone can and should research this option for themselves- no differently than they should do so for all of their treatment options. But make the treatment available to those who have done that research and do want to undergo the treatment. If it's risky, fine. So is Tysabri- more people died on Tysabri than on this treatment.

But I appreciate your view.
Three veins angioplastied.  One renewed life.  
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BooBear wrote: this is freaking simple

Postby MarkW » Sat Apr 16, 2011 2:48 am

BooBear wrote:
At the end of the day, this is freaking simple.
1 - The condition exists.
2 - Treat it.
3 - Treatment makes us feel better.
4 - Deal with that.
5 - Move the frick on.

It is that simple and I totally agree with BooBear's sentiments. I would express it with more words for the medical world as they generally have problems understanding patient's views.

1 - CCSVI syndrome is diagnosed using catheter venography or intravenous ultrasound.
2 - CCSVI syndrome may be treated safely using balloon venoplasty.
3 - Physicians and patients report improvements in MS symptoms after this symptomatic treatment with hundreds of examples.
4 - Safe symptomatic treatments are often used in complex diseases before the impact on the disease etiology is understood.
5 - MS is a complex disease of unknown etiology, even after decades of research. Symptomatic treatments are the only therapies available for this lifelong progressively debilitating condition.

It is simple to us (CCSVI advocates) but humans (yes that includes neuros) are very slow to change. So we should not expect them to reverse 50 years of thinking immediately. Unfortunately time is not on our side as we have MS.

MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Liberation » Sat Apr 16, 2011 4:31 am

Cece wrote:
Liberation wrote:What kind of publications? The data they collected from patients through a questionery. :)

Dr Simka's and Dr. Ludyga's safety study:
http://phleb.rsmjournals.com/cgi/conten ... t/25/6/286

Dr. Simka's optical coherence tomography study:
http://ccsvism.xoom.it/ISNVD/Abstract-S ... erence.pdf

Dr. Simka's ultrasonography study:
www.fondazionehilarescere.org/pdf/04-2481-ANGY.pdf

Dr. Simka's MR study:
www.ncbi.nlm.nih.gov/pubmed/20127806

Dr. Simka on BBB compromise/endothelial damage leading to autoimmmune condition:
www.ncbi.nlm.nih.gov/pubmed/19442163

If you are right about the potential for Eastern European countries to do more with the follow-up and research, it would be a very good thing! I know Erika posted about going in as a control in January of this year.


Thanks for the info, Cece. Believe me, I would be one of the happiest person on earth if we had better results or there would be more follow-up visits.

We can do as much research on the internet as we can, but lets face it we are not doctors. What I can tell that dr Simka's and others' results must convince other IRs who are not directly profiting from CCSVI not us. I feel that we are not there yet. ...and then we still got the neurologists. :)
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Postby Liberation » Sat Apr 16, 2011 5:04 am

BooBear wrote:

We haven't met. I go by BooBear. I researched the treatment for a long time before I was successfully treated in Albany on Aug. 13. 2010.
While many patients experience issues post-treatment, how is that different from any of the other treatments available to this community currently? By the way, these veins do stenose in patients that are on dialysis. Wanna take a guess how they treat that condition? Yup. Angioplasty.

quote]

Hi BooBear. :) It is really good to hear that you are doing fine after the angioplasty. There is a thread where they tried to collect those people who have positive results one year after the procedure. You are getting close to it. :) As far as I remember, no one has reported yet.

You were also lucky if you think you could do a good research in August, 2010. I feel the more I learn about CCSVI the less I know about it.

As far as I remember that was the time when everyone applauded dr Sinan's techniques. As I can see time has changed since. Dr Sclafani turned back from using extra large balloons and he is also more cautious about breaking the annulus. Dr Sinan is still doing these. We saw lots of veins collapsed and full occlusions.

You should know that the major problems are the complications after operation and the long-term effct of the operation. These veins have never been treated before and we can see lots of complications. Veins get collapsed, scarring, intimal hyperplasia, etc. Many patients experienced initial improvements, then after a few months their conditions got worse than before.


I agree. We all know about the potential good results, but these concerns are real and just because we have a big problem we should not add insult to injury. I really hope that dr Sclafani's approach with ivus will handle some of these problems.

Here is the deal. Everyone can and should research this option for themselves- no differently than they should do so for all of their treatment options. But make the treatment available to those who have done that research and do want to undergo the treatment. If it's risky, fine. So is Tysabri- more people died on Tysabri than on this treatment.

But I appreciate your view.


I agree with you. However, I think we would need some control from professionals not just for CCSVI operation, but all those alleged cures that you can buy on the internet or somewhere else. There are lots of desperate patients here and even doctors take advantage of them. Even dr Zamboni drew attention to this.
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oo dat hoits

Postby 1eye » Sat Apr 16, 2011 7:07 am

I gotta get some sleep! I just spent the whole night looking for that rant somebody on a locked thread referred to. I couldn't find it. Don't you guys have a little ranting you could do to help me out, here? I'm getting really desperate.

We ought to be demanding some control from professionals not just for CCSVI operation, but all those alleged cures that you can buy on the internet or somewhere else, like Tysabri, yes, and don't forget, people lose more than their lives because there is a lot of market manipulation that goes on. Was who was it lost lot of money when the announcements were suddenly made about the Tysabri deaths? More to the point, who suddenly made a whole lot of money when the announcements were made about the Tysabri deaths? Who was prepared for those announcements? Same questions might be asked about the multicenter multinational MBP8298 trials. Why did anyone think that stuff might do anything? Many people lost their shirts.
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Re: oo dat hoits

Postby HappyPoet » Sat Apr 16, 2011 9:11 am

1eye wrote:We ought to be demanding some control from professionals not just for CCSVI operation, but all those alleged cures that you can buy on the internet or somewhere else, like Tysabri, yes, and don't forget, people lose more than their lives because there is a lot of market manipulation that goes on. Was who was it lost lot of money when the announcements were suddenly made about the Tysabri deaths? More to the point, who suddenly made a whole lot of money when the announcements were made about the Tysabri deaths? Who was prepared for those announcements?

Answer: The general counsel of Biogen was caught red-handed participating in insider-trading:

Former Biogen Executive Settles Insider-Trading Charges
by John Hechinger, Wall Street Journal, January 12th, 2006
http://www.corpwatch.org/article.php?id=13094

Wall Street Journal wrote:The former general counsel of Biogen Idec Inc. settled securities-fraud and insider-trading charges, agreeing to pay more than $3 million related to his sale of company shares on the day the biotech company learned that a patient taking its new multiple sclerosis drug was sick with a deadly infection.

Biogen's general counsel -- a lawyer (!!!) who most definitely knew that he was breaking the law. His behavior was immoral, unethical, and ILLEGAL.
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Postby 1eye » Sat Apr 16, 2011 9:28 am

Why do I have my suspicions that a lot of MS Society Executives and a lot of neurological scientists were in a position to get to their stock brokers before that lawyer did? I must be just a natural-born paranoid.
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Postby HappyPoet » Sat Apr 16, 2011 11:18 am

1eye wrote:Why do I have my suspicions that a lot of MS Society Executives and a lot of neurological scientists were in a position to get to their stock brokers before that lawyer did? I must be just a natural-born paranoid.


http://eon.businesswire.com/news/eon/20 ... cy-Richert

CAMBRIDGE, Mass.--(BUSINESS WIRE)--Feb 8, 2010 - Biogen Idec (NASDAQ: BIIB), a global biotechnology leader in the discovery, development, manufacturing and commercialization of innovative therapies, today announced that John R. Richert, M.D., will be joining the Company as a Senior Fellow in Neurology Research and Development and Nancy D. Richert, M.D., Ph.D., will be joining as a Fellow in Neurology Research and Development. ... Dr. John Richert joins Biogen Idec from the National Multiple Sclerosis Society (NMSS), where he served as executive vice president for Research and Clinical Programs for the past five years
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Re: oo dat hoits

Postby Liberation » Sat Apr 16, 2011 12:30 pm

1eye wrote:
We ought to be demanding some control from professionals not just for CCSVI operation, but all those alleged cures that you can buy on the internet or somewhere else, like Tysabri, yes,


I fully agree. However, I am afraid that our knowledge is very limited and we are far from solving this puzzle. On the road, we will encounter many people who wants to make money from our problems. Don't forget health care is a very lucrative business. Sometimes I feel it is only business. :(
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Postby 1eye » Sat Apr 16, 2011 1:49 pm

Who ever told you health care was anything else but business? However, even businesspeople don't like getting ripped off by con-artists/scientists/whatever-you-want-to-call-them, who sell all their shares because they haven't let the other shareholders know that the product is killing people, or because they know that a fake prospectus has been cooked up around a product that has not the slightest inkling of a chance of helping anyone, ever, period, and the suckers are ripe. Snake oil, anyone?
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Postby EJC » Sun Apr 17, 2011 3:28 pm

Before we even get to the holy grail of a "study" or defined quantifiable results there are a number of stumbling blocks.

Most have already been covered in this thread and elsewhere on the forum but the biggest problem is firstly coming up with a comparative, quantifiable series of questions that can be answered by comparative, quantifiable answers.

Emma today recieved a questionaire from the EHC. Questions covered were simialr to this:-

Since your CCSVI procedure has your fatigue level:-

A - remained unchanged
B - Much better
C - better
D - worse
E - Much worse

None of that is scientific, mainly because you're trying to measure the unmeasurable.

CCSVI treatment won't revers nerve damage so how do you actually scientifically measure of any of it at all?

Emma had a freak result with eyesight, her eyesight improved dramatically on the table to a degree that we had to get new glasses. Her prescription was changed by 20% (improvement) and overall sight improvements was almost 30% verified by her opthalmologist. This was a boon as it is measurable...nothiung else with CCSVI is, it's all very subjective.

So the first struggle is not getting results, it's actualy organising a standard test and working out what results are measurable to a degree that they can be universaly repeated.
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